Thursday, June 9, 2016

In the world of children’s rehab, it’s often moms who become experts on their child's disability or injury, take their child to therapy and medical appointments and carry out interventions at home. We even ascribe a culture to them, calling them warrior moms or Mama Bears.But what role does this leave for dads?A largely invisible one, according to a new fact sheet from the Parenting Matters research team at the Centre for Research on Children and Families at McGill University in Montreal. Parenting Matters is studying what it means to parent a child with a disability like autism, Down syndrome or cerebral palsy.“Integrate fathers and increase their visibility in clinical practice and research” is one of four main recommendations in Why Focus on Father-Inclusive Practice? The strategies come from 83 parents, clinicians, managers, researchers and policy-makers who participated at a 2014 symposium for the Canadian Network of Children and Youth Rehabilitation and the Canadian Family Advisory Network.

Other recommendations include:

-create flexible service hours, including evenings and weekends, and use technology like Skype to allow working fathers to participate in clinic visits-focus on gathering information from all parents or caregivers, recognizing that each family is unique

-and develop fathers’ groups that involve dads in an activity and informally provide the opportunity for peer support.Before drafting these ideas, participants heard about findings from a doctoral study on the role of dads raising children with disabilities by researcher and social worker Aline Bogossian. They also discussed the myth that “fathers aren’t interested in being involved in their child’s care plan.”BLOOM: Why don't we see fathers more often in children’s rehab?Aline Bogossian: One of the reasons dads are invisible is likely the way work is distributed between parents—with mothers being present with the child in clinic and fathers being out in the work world. The other is that in research, when we talk about parenting, we’ve been talking about mothering. I was involved in a large, comprehensive, systematic review of literature on parenting kids with disabilities that spanned over 25 years, and studies that included dads in their samples were few and far between. That may be because it’s easier for researchers to access someone who is in clinic than to ask for the parent who’s not there.

There are also a lot of single-parent families where the fathers are hard to reach and we haven’t attempted to find them. So we don't hear dads' voices in research.BLOOM: What are the downsides of not having fathers involved in their child's care?Aline Bogossian: Fathers who are interested in being in their children’s lives are important to their children and must be supported. The kids want their dads. We can’t assume that dads are not interested just because we don’t see them in clinics. There is also the downside of having mom doing all of the work, which means that the burden of all of that work remains on her. She becomes the expert and more and more, over time, is the one called upon. So that restricts the role the dad can take on. BLOOM: Something I found challenging as the primary caregiver when my son was young was that I often had to convey diagnoses or difficult news to my husband, and that can create a lot of stress.Aline Bogossian: Yes, that’s huge. It’s different when a parent hears something from a clinician as opposed to a partner. The mother may not have, or remember, all of the information. She may not have the tools to answer the questions the father has. We all have different information-seeking styles and needs. Having mothers assume that burden could drive a wedge in the family. The other thing that happens when dads aren’t at clinic visits is that they aren’t able to access support. I’m a clinical social worker and also the parent of a child who had a pretty serious chronic illness early on. I was the one in clinic getting all of the information, but I was also in clinic feeling supported. I was able to break down there and have someone to speak to, which is another thing a spouse who isn’t there misses.BLOOM: I think the roles that parents play is a very sensitive topic. I think if you were to ask moms if they’d like their partner to be more involved, they’d say yes. But to be honest, in some ways, I think they might push back when asked to give up some of that control.Aline Bogossian: Yes, it can be tricky to give up those parts of yourself. While caregiving is very difficult work, it’s also extremely meaningful work. I think most important is not to make assumptions that one person can adequately speak for the experience of two.BLOOM: What were the most important ideas you heard on better including dads?Aline Bogossian: It came out strongly that the clinic should be an inviting place where dads can see themselves as welcome. Perhaps there are images or pictures that include dads with their kids, or by using language that is inclusive. So refer to mother and father, instead of parent. Clinicians need to be more creative in their use of technology or in the way they organize important meetings where decisions have to be made, to ensure that both parents can participate. So perhaps Skype is used to make a space for dad, or maybe advance notice is given so that dad can attend. We need to recognize that each family is unique.BLOOM: Some of the recommendations are about changing clinic hours to evenings or weekends, so that parents who work can participate. Have you seen rehab centres make these kind of changes?Aline Bogossian: I’ve been on the road with some of this work and I've seen some clinics create shifts so that some staff work in the morning till around 2 or 3, and others come in later and work until 9. And they offer these extended hours once or twice a week. BLOOM: Your fact sheet says that dads report feeling invisible in children’s rehab. Does this lead them to feel inadequate, which then makes it less likely that they will get involved?Aline Bogossian: Fathers speak to me about feeling invisible. They say ‘Even when I’m here, no one asks me anything.’ There are also fathers who are on a solitary, lonely journey. They feel their role is to support their partner, who is doing a lot of the work, and they don't want to burden her psychologically. They don’t feel there’s a space where they could ask for help or talk about their suffering. BLOOM: I interviewed a single dad who is raising his daughter with disabilities. And he mentioned that when his daughter was hospitalized, if her mother visited, the doctors and nurses would start addressing all of their questions to her, and ignore him.Aline Bogossian: What you’re describing is a culture that says a dad can’t be a primary caregiver. These are popular stereotypes that we need to be aware of and change. That came up in our recommendations. If dad is in clinic or hospital with mom, do not direct all questions to mom. Ask both parents what they think. BLOOM: This same dad had attended some support groups for parents of children with disabilities and found he was the only dad there and didn’t feel very comfortable.Aline Bogossian: We recommend peer support for dads, but not in the traditional ways where mothers get together and talk. The idea is to get dads together to do an activity. For example, there’s a group for bereaved men that walks on Mount Royal here in Montreal. Apparently they start talking about sports or whatever, and then they eventually get into a space where they feel supported and conversations about what they’re going through naturally emerge.Aline Bogossian is a social worker, a researcher coordinator at the Centre for Research on Children and Families, and a doctoral student in the School of Social Work at McGill University.

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